Happiness and MS

woman doing hand heart sign

In short, I felt like gutting my immune system from my entrails. My mind from my brain. And my eyes’ life experiences dunked in a glass jar filled with ethanol.

Life with MS. Nobody said it would be easy. Or, straightforward.

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MS, fake or not

pexels-photo-1058388

The assumption that of the many invisible symptoms associated with MS, some can be faked – as if they’re digitally pasted on someone – is flabbergastingly prejudiced and foolish. It portrays a clear lack of understanding of what MS as a neurodegenerative illness is and what its impact is one those living with it.

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MS and PTSD: not all in your head

model-of-human-brain

Life with MS is an is an ever-changing intimate tale of loss and redemption and of love and forgiveness within your relationship with yourself. Not one day should be the same, and not one minute can go lost to idle words or feelings.

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MS + single on Valentine’s Day?

adult beautiful beauty close up

You can channel your inner delightfully, dazzling diva while wearing pyjamas, dog-shaped winter socks, leg warmers and your turban hair towel.

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My Christmas heroes

Those who willingly and therefore as blindly as I was, kept walking beside me are the heroes in this fourteen year long tale of chronic illness, daily wretched pain and forgiveness, of daily adaptation and understanding.

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Time heals, perhaps even MS

Dangling clock

As you move on in life, you will find that perhaps your diagnosis was something that needed to happen to see what is really important in life.
It is not an expensive new car, clothes, jewelry.
It’s health and acceptance, though flawed the best of times.

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In search of my MS Zen

Despite having my inner dialogue running into philosophical mayhem, parameters on what I perceived to be acceptable have been reset, and my inner dialogue needs a fix as an intuitively sharp anguish took over my mindset last week.

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Giving up?!

Red umbrella

But, MS is the keeper of secrets. Not just for a day, but forever. So, rewrite your narrative, embrace its playful game of cards waiting for you to chase triumphs during times of adversity.

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Pull up your big girl panties!

On the beach

Let me count… Roughly speaking, I was diagnosed with MS about 5000 days ago. That’s one fair bit of experience under my hood, right? But… When talking to people, new or otherwise, it can be difficult telling them you’re living with an incurable neurodegenerative illness. Sometimes it feels like being in an uninterrupted car crash, minus the […]

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You retired at age what?

Old clock

So, yes, I retired at age 36,5 and it will never be what I envisioned when I moved to Ireland. I ‘ve crashed and burned, stumbled and found hope in tiny triumphs and friendships larger than life that will stand the test of time.

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Bliss, the MS-way

Apple autumn

I long for autumn since the first few warm days. I long to walk in Phoenix Park, kicking up fallen leaves that have been building up under large oak trees. The changing of colours in nature is invigorating, it serves as a token that life goes on, that seasons come and go, each year bringing new fragrances and new stories waiting to unfold.

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The beauty and cruelty of words

woman writing on a notebook beside teacup and tablet computer

What we hold dear about putting pen to paper is the urge to create something out of nothing, quite often to slow down a fast-paced society where the purity of words have become chaotic and yearn to become meaningful and treasured again.

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Starting over

Clock vintage

Sacrificing your life for a chronic illness never comes easily. You learn to compensate and decide how reliable your judgment is based on what you can put in physically, mentally and emotionally. Quite often, what lies within you is mentally infinitely stronger than anyone might realise – even yourself –  because, until that point in time, you have been at your worst already.

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I am not my brain

Brain MRI

“What’s wrong with my brain?” doesn’t automatically mean, “Is my mind, my soul therefore broken as well?”

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What singing taught me about life with MS

Black & white image singlng

It is hard to explain the following depth of reality. One morning shortly after my diagnosis, I woke up and thought, “From now on, I will wake up sick every day, and I need to accept that I will never get better again – unless a cure is found.”

That level of new normals isn’t easy. Then again, finding something black to wear while standing in front of a wardrobe filled with black clothes only, isn’t either. The same goes for the many pairs of black shoes, black rings, and necklaces.

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The day I stopped being weak

Tired person running

You never know how strong you are until being strong is the only option you have. How true is this? You lose a parent, a brother or sister, or someone else you dearly loved and yet, time goes on. Time has to go on. For your family, for yourself. Years later you realise you went […]

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Why I should be a brainiac, but I’m not

OMG shock and awe

It happened again. Just when I attempted to maximise my brain, it decided to take over and run the show. It’ll be fun, it said. But, it was so not pretty. Not even by a long mile. With so much physical pain and hence collected a fair amount of neurology-related knowledge due to life with MS, […]

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You will survive!

To this day, 13 years post-diagnosis, I am still prone to having conscious/unconscious battles. I am past the “woe is me” period that tried to knock me sideways at first, but I still have pacing issues that lay bare any ineffectiveness I attribute to myself.

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Where is my left cheek?!

Fatigued girl hands on her face

Trigeminal neuralgia feels like a vicious affair, and it is still hard to know who came first, TN or MS. Being a lover of Shakespearean drama, they would tell you they arrived around the same time.

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The truth about Cinderella

Some days I go through life like a half-baked version of Cinderella. There’s promise at 8 AM, but by 11 AM my fairytale book is closed until further notice. In the background, that all-important clock keeps ticking forward, but my body is in a rut: sleeping, eating, exercising, resting, more eating, more sleeping and back again. And […]

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Do I have stupid written on my forehead?

Can you recall what life was like before this craziness started? Nope? Neither can I. There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organise a party, or rather, a pyjama […]

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The five-second MS rant

pexels-photo-48566

When physical restraints curb your potential, you realise that you want so more from your life. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.

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Magnetic voices

Life with MS is about adaptation. What you can do, however, is listen to the voice of reason, no matter how hard it might seem. It might say that you will need time, rest, medicines, a decent medical team and a seriously good dose of positivity to go through life.

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MS Anxiety

Research shows that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself.

Not so fast, buster!

I begged to differ.

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The MS blame game

Tempus fugit

Earlier this year, my right eye behaved erratically because of a significant amount of stress that led to ongoing optic neuritis. My eye doctor recommended several times that reducing stress levels as well as cutting back on laptop, smartphone and TV use would be beneficial.

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Paper dreams

Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?” Have you? Congratulations, so have I! It took me the better part of my teenage years to get to the stage where I thought, “Yes! Eureka! Yes, I found out what I am doing […]

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Injecting object

Originally posted on Ireland, Multiple Sclerosis & Me:
Injection needle, fridge. Taking out another pre-filled syringe to ward of future multiple sclerosis relapses. To others? A scary thing, a daily habit they could not fathom. To me? Now, the fluid of my life. For my life. It feels cold in my hand, but warm to…

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Jammed filter!

Just forgot image

I didn’t dumb down, I just kinda go dumber depending on my physical state of being before regaining some speed again.

My neuropsychologist pointed out that sometimes, my ability to handle particular mental tasks may skip the F1 pole position, but that brain training was a great way to stop the decline.

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Balancing life and a chronic illness

Oh, you can bet I am willing, I am usually more than willing. When physical restraints curb your potential, you realise that you want so more from your own life, and out of your own reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential. It simply reminds you that being chronically ill sucks.

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0% responsibility – 100% accountability

Today, I joke about not being perfect or about my mind behaving like a repetitive software update that refuses to stick after a few busy days. I may add that my bones rattle and that I have a Club Med-type relationship with three different hospitals, my primary care physician and my pharmacy. Or, I forget my name, fall asleep at fancy receptions, need an hour to cut three peppers and two onions and sometimes need to nag to myself to get things done.

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MS and single on Valentine’s Day?

Couple holding hands

You can channel your inner delightfully, dazzling diva while wearing pyjamas, dog-shaped winter socks, leg warmers and your turban hair towel.

You can drag your duvet to the living room, watch Romeo + Juliet and cry for an hour afterward because Leo died when he shouldn’t have (Damn you William Shakespeare!)

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200 days

“To many, life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. Because of this, I don’t want them to see what MS can turn into. I refuse to show them that there is no cure, I refuse to give them a reason to give up on me. In my view, it is very much a case of the illness being mine, but the tragedy theirs if I let them.”

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Then & now

“Following that, I hit writer’s block faster than you can say ‘ABC’. That writer’s block has reached the ‘XYZ’ stage, so I’m nearing a muse that sounds, tastes and smells like coffee.

Starbucks.

Where I am funnily always full of ideas.

Away from notebooks and pens, I scrapped another item from my bucket list in September.”

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Conversations with myself

Nevertheless, positivity, when faced with chronic illness, is not a cure. It never will be. That doesn’t mean I can’t slander myself, right? Hitting the nerve, as it were. If my central nervous system is allowed to hit me, I am as authorised to hit back. Three times over.

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disABILITY

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific […]

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